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Tuesday, July 25, 2017

I suspect I could have had this easier, but be that as it may, I searched for bioethics/health care ethics/ medical ethics journals on google scholar to see how they fare in terms of citations over the last five years.

Quite possibly the below table will be displayed in odd ways on your screen.

Usual CoI blurb applies. I co-edit two of the journals in this list. List up-dated July 2017. Any mistakes are my own, please alert me if you discover discrepancies between what I am reporting and what you're able to find on google scholar.

Thursday, July 06, 2017

Here's a pieceIhave put together jointly with Xavier Symons for The Conversation.

Euthanasia debates often focus on people experiencing unbearable physiological or psychological suffering. But research suggests “loss of autonomy” is the primary reason for requesting euthanasia, even among patients with terminal cancer. There have also been suggestions existential suffering could be one of the main motivations behind such requests.

Existential suffering refers to an individual experiencing a lack of meaning or sense of purposelessness in life. Such sentiments bring feelings of weariness, numbness, futility, anxiety, hopelessness and loss of control, which may lead a dying patient to express a desire for death.

Some bioethicists argue it is inconsistent to allow euthanasia for terminal illness but not for existential suffering, as both are a source of profound pain and distress. While existential suffering usually tracks closely with catastrophic illness, it’s worth considering a situation in which there are no motivating medical reasons for a request for euthanasia or assisted suicide. Should a person be eligible purely on the basis they no longer wish to live?

A case in point: a largely healthy retired palliative care nurse in the UK who ended her life at an assisted suicide clinic in Switzerland. Should she have received medical aid in dying based on her carefully considered decision that she did not want to subject herself to the perceived awfulness of the ageing process?

The case against

Xavier Symons, Research Associate, University of Notre Dame Australia

Some may think people who request euthanasia do so because of excruciating and unremitting pain. The reality is almost always more complex. Literature on assisted dyingsuggests individuals who request euthanasia are typically suffering from a profound sense of purposelessness, loss of dignity, loss of control, and a shattered sense of self.

A 2011 study of Dutch patients who requested euthanasia indicated that “hopelessness” – the psychological and existential realisation one’s health situation will never improve – was the predominant motivation of patients who requested euthanasia.

And a recently published Canadian study of requests for medical assistance in dying stated “loss of autonomy was the primary reason” motivating patients to end their lives. Symptoms also included “the wish to avoid burdening others or losing dignity and the intolerability of not being able to enjoy one’s life”.

One option to address such requests is to establish a state apparatus to assist patients in ending their lives. An alternative, and one I would advocate, is to address deficiencies in health care infrastructure, and attempt to alleviate the unique suffering that drives patients to request euthanasia in the first place.

Spiritual or existential care can help someone who feels their life has lost meaning.from shutterstock.com

New approaches to end of life care, such as spiritual or existential care, engage at a deep level with the complexity of the suffering of patients with terminal illness. And, as has been stressed by severalcommentators, there is a need to improve access to palliative care in poorer regions, and provide optimal symptom management for patients wishing to die at home.

We could hypothesise about various situations where a person might request euthanasia without having a medical condition. Someone might wish to hasten their death because they are tired of life or afraid of ageing or death.

These cases are interesting insofar as they are not motivated by an underlying pathology. Yet there is much reason for concern.

Sanctioning euthanasia for the tired of life veers too close to a government endorsement of suicide. Where the state has a significant stake in suicide prevention, sanctioned euthanasia for existential suffering is not only counterproductive, it’s dangerous. Fundamentally, we would erode any meaningful difference between cases of suicide we regard as acceptable, and those we see as regrettable and befitting state intervention.

We might regard it as regrettable that an educated, wealthy 30-year-old takes their own life due to an existential crisis. Yet it is difficult to say how this is different in morally relevant respects from a 75-year-old who feels their life is complete and is undergoing an existential crisis.

The case for

This discussion is mostly hypothetical. There seem to be few, if any, real-world cases where a competent person’s request for an assisted death is not motivated by an irreversible clinical condition that has rendered their lives not worth living in their considered judgement.

For instance, in the Netherlands, most people who ask for euthanasia and who are not suffering from a catastrophic illness, typically experience a terrible quality of life that is caused by an accumulation of usually age-related ailments. These involve anything from incontinence to deafness, blindness, lack of mobility and the like.

We do not give up on life for trivial reasons. Just think of the many refugees who – on a daily basis – are willing to risk their lives to escape an existence they do not consider worth living. Ending their lives is not typically on top of their to-do list.

Think of the many refugees who risk their lives to escape an existence they do not consider worth living. Ending their lives is not on top of their to-do list.ZEIN AL-RIFAI/EPA

The case of the anti-choice activists – who deny there is ever a justifiable reason for euthanasia – has been intellectually and politically defeated. None of the jurisdictions that have decriminalised assisted dying have reversed course, and more jurisdictions are bound to make this end-of-life choice available.

Public support remains strong in each permissive jurisdiction, particularly so in Belgium and the Netherlands where the majority of citizens support the existing laws.

Inevitably the question of scope must be addressed: who ought to be eligible to ask for and receive assistance in dying? If a competent person wishes to see their life ended for non-medical reasons, and asks for assistance to do so, I think a just society ought to oblige him or her if the following conditions are met:

the person has decisional capacity (is of “sound mind”)

the decision is reached voluntarily (without coercion)

no reasonable means are available, that are acceptable to the person, that would render their lives worth living again in their own best judgement

based on everything we know, the condition that motivated their request is irreversible.

The view that medicine is a profession aimed only at maintaining life, regardless of a patient’s quality of life, is dying its own death. If a clinical, psychological or other professional intervention does not benefit a patient to such an extent that they consider their continuing existence worthwhile, by definition that is not a beneficial intervention.

Equally, if an intervention, at a burden acceptable to the person, renders in their considered judgement their lives worth living again, they will not ask for an assisted death.

In most corners of the world people have fought hard to increase their individual freedoms to live their lives by their own values. A significant state interest is harmed if the state wishes to infringe on such autonomy rights.

Xavier Symons

It is true the health system, and indeed the state, should respect patient autonomy. Yet in practice we often put other considerations ahead of concerns like autonomy. Patients may not receive the treatments they request for a variety of reasons, like they may be prohibitively expensive, have a negligible chance of success, or no medical justification.

I believe if it is harmful to the interests of the state to legalise euthanasia for patients without a terminal illness, then the state has a right to refuse.

Significantly more research needs to be conducted on the social impacts of euthanasia, and physician assisted suicide, for patients without a medical condition. In this case, we have no “Oregon model” – an assisted suicide regime seen by many as an example of a safe and well-regulated system – to confirm or assuage our concerns. Jurisdictions such as Oregon only allow assisted suicide for patients with a terminal illness.

Udo Schuklenk

I echo Xavier’s plea to improve health care in order to improve our quality of life, and, as a likely corollary of this, to reduce the number of requests for medical aid in dying. However, even in the best of all possible health care worlds, unless unbearable suffering itself has been eliminated, some patients will ask for an assisted death. No amount of “dignity therapy” rhetoric and references to small-scale studies changes that fact of the matter.

Xavier correctly mentions some reasons for doctors justifiably not providing certain patient-requested medical care. They are all based in different ways on harm-to-others justifications such as resource allocation rationales, or are futility-related (arguably also a case of harm-to-others given the reality of limited health care resources). This reasoning is not applicable to the case under consideration given the self-regarding nature of the request.

Xavier is correct that the state would be under no obligation to legalise euthanasia for not catastrophically ill patients if that was significantly harmful to the interests of the state. However, there is no evidence that the availability of euthanasia is harmful to state interests.

Friday, March 10, 2017

I know I know, I have not posted much since September last year. It's been an unusually busy time, professionally, so I must beg for your understanding that this blog has taken a backseat to other projects. I mostly want to alert you here to content I have published or that I have forthcoming. as well as the odd project that's going forward.

Let's start then with a heads-up on publications! I have done a lot of work on the issue of conscientious objection, mostly because I feared (I was right) it would be one of the tools in the armament of those determined to subvert the Canadian Supreme Court decision that decriminalised assisted dying. We have since discovered that buildings (hospitals) think they have conscience rights, even conscience rights that weigh heavier than the conscience rights of the doctors and other health care professionals working in them. Naturally, I am referring to Canada's legions of Catholic hospitals. Then there are health care professionals who think that saying 'I object on grounds of conscience' to the delivery of professional services that they are monopoly providers of, should kinda trigger all-out societal accommodation efforts, patients rights to service delivery be damned. I think both the hospitals as well as those doctors got it badly wrong, and I published a few papers designed to show why that is so.

There are a few other papers in the production pipeline, one on treatment resistant depression and assisted dying is currently under review, and a piece on catastrophically ill patients right to access unregistered medical interventions, forthcoming in the Journal of Law, Medicine and Ethics.

I am currently busy organising an international workshop to be held at this lovely location in mid August, on recent revisions of the World Medical Associations Declaration of Helsinki and the Council for International Organisations of Medical Sciences research ethics guidelines. My own take on the CIOMS document was published in the Indian Journal of Medical Ethics.

Last week, in London, I spent a day with Ruth Chadwick, the other Editor of Bioethics, and our Editors at Wiley, to discuss how we will develop the journal to make it even more successful. Stay tuned for developments on that frontier. Oh, Ruth and I are also close to completing a new bioethics textbook that we are writing jointly. It's years late, which is probably inevitable when you have your plate full with research, teaching and other stuff, but we're close to completion of that project!

I also delivered on the teaching frontiers, creating a new first-year bioethics course for Queen's undergraduates. I have not taught undergraduates for oodles of years, so that was quite an experience. The teaching evaluations suggest that folks enjoyed it. But then, I would say that, wouldn't I?

Last but not least, in the end of March Ruth and I will be off to China to participate in a bioethics conference.